Tuesday, August 31, 2010

Alberta researchers hoping to prove once and for all a debilitating syndrome is viral in origin are launching an ambitious study in Calgary and Edmonton.

Outbreaks of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have been documented since 1930, but have no known cause or accepted diagnostic tests.

Recent research has argued both for and against the theory that ME/CFS, which causes exhaustion, sleep disorders, cognitive problems, and muscle and joint pain, is linked to a retrovirus called XMRV, a relative of HIV.

Dr. Eleanor Stein, a Calgary ME/CFS specialist and researcher, said a study launching in Calgary will look to confirm if the syndrome is in fact linked with the retrovirus, which is tricky to find and treat.

“The retrovirus actually fits itself into our own DNA so that when our DNA replicates, the retrovirus replicates with it,” she said.

There is no known treatment for ME/CFS and it is estimated more than 300,000 Canadians may be affected.

Stein will be joined by Dr. Lorne Tyrrell, founding director of the Li Ka Shing Institute of Virology in Edmonton, and Dr. Michael Houghton of the University of Alberta, who holds the Canada Excellence Research Chair in Virology, for a preliminary study next month.

The subjects will answer questionnaires and have blood drawn ideally by the end of September, said Stein, so the research team has enough time to gather data and apply for grants early next year to fund a larger study.

Patients severely affected by ME/CFS are invited to join the study as well, as the team can draw blood at their residences.

Interested Calgarians are asked to call 403-287-9941 and Edmontonians 780-492-8415.

Monday, August 30, 2010

RED Laboratories has licensed the proprietary XMRV test from WP Biotechnologies, a wholly owned subsidiary of the Whittemore Peterson Institute. We use the co-culture procedure, where the sample to be tested is put in contact with an infection-sensitive cell line.

XMRV is allowed to replicate in the cells for several days, resulting in significant amplification of viral titers. The amplified virus can then more easily be detected by PCR or Western Blot. This procedure is more sensitive than direct PCR.

In the future a serology test will be available, which may provide more information regarding the stage of infection and may be able to detect the presence of latent viruses that could not be detected by the co-culture technique.

Saturday, August 21, 2010

Justine Roach, 37, is currently stuck in a psychiatric unit on the Isle of Wight.

She suffers from severe ME and is without appropriate medical care. We do not know all the details of the situation but her family is not helping and her ME/CFS friends are very worried. Understandably, she wants out.

She is bedbound and needs to be cared for, not just labelled as depressed and left. This groups sole intention is to help Justine and to secure appropriate medical care for her.

Worldwide much of the transmission of HIV-1 is through sexual contact, men being the transmitting partner in a majority of cases. The new findings are significant because the nature of the virus in the male genital tract is of central importance to understanding the transmission process and the selective pressures that may impact the transmitted virus. Ultimately it is the transmitted virus that must be blocked by a vaccine or microbicide.

Thursday, August 19, 2010

Turns out the modern-day interpretation of the iconic Lancia Stratos that took the internet by storm the past couple of weeks is in fact a real car and it will be produced. German media, including Auto Motor und Sport magazine, reported today that the Stratos is a one off -at least for now- commissioned by Michael Stoschek, owner and CEO of the German automotive supplier, Brose KG. It is not clear if the Lancia badge will be used on the final car since it's not an official product.

AMS reported that the car, which pays homage to the legendary Lancia Stratos HF of the 1970s, is being built and developed by famous Italian design house, Pininfarina, and it's possible that it could be produced in an extremely small number of copies if more very deep-pocketed customers are interested.

Wednesday, August 18, 2010

Invest in ME: In a world where doing nothing about the scandal of ME has been the norm for governments, where immoral and corrupt or even criminal acts are perpetrated on ME patients and indirectly on their families by individuals and organizations who wish to maintain their influence, where it is easier for society to ignore rather than face up to the scandal of ME - the WPI shines as a beacon of hope for millions that their lives will improve.

The Whittemore Peterson Institute for Neuro Immune Disease aims to bring effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability.

The WPI will facilitate and advance patient care; research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism; develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases; and advance and support medical education and physician training.

The WPI will be based at the University of Nevada School of Medicine, Centre for Molecular Medicine, - a state-of-the-art 100,000 square foot facility on the Reno campus. The Centre houses portions of several university departments and includes research laboratories and clinical space.

Invest in ME would like to congratulate the Whittemore-Peterson Institute, its founders Mrs Annette Whittemore and Dr Daniel Peterson and Research Director Dr Judy Mikovits, Dr Vince Lombardi and the others who make up this brave new world.

And we would like to thank the Whittemore family for their often unrecognized yet crucial support and belief in this venture.

The Whittemore-Peterson Institute for Neuro-Immune Diseases offers the hope to millions that proper science will prevail and overcome the ignorance and corruption which has been allowed to destroy lives of people with ME.

As we begin our attempt to create a similar centre of Excellence for ME in the UK Invest in ME wish to thank publicly the WPI for their vision, determination and courage in showing the world the direction - in not looking at things the way they are, and asking why ...but in dreaming of things that never were, and asking why not?

Congratulations to the WPI from Invest in ME and our supporters and best wishes for the future.

Monday, August 16, 2010

1934: The first known cluster outbreak of ME/CFS in the United States occurs in Los Angeles, California.

1987: New Zealand family physician J.C. Murdoch writes a letter to The Journal of the Royal Academy of General Practitioners (now known as The British Journal of General Practice) making a case that ME/CFS is not “hysteria” as some other physicians have concluded but is, he believes, a physiological disease with decreased cell-mediated immunity. He concludes the letter: “…. the syndrome is an acquired immune deficiency syndrome and we are presently searching for evidence of retrovirus infection in our patients.”

It is the first known mention of the word “retrovirus” to categorize ME/CFS.

1991: A young researcher at the University of Pennsylvania’s Wistar Institute named Dr. Elaine DeFreitas discovers evidence of a retrovirus in the blood of ME/CFS patients. The CDC, however ...

In October 2009, we reported the first direct isolation of infectious xenotropic murine leukemia virus-related virus (XMRV). In that study, we used a combination of biological amplification andmolecular enhancement techniques to detect XMRV in more than 75% of 101 patients with chronic fatigue syndrome (CFS). Since our report, controversy arose after the publication of several studies that failed to detect XMRV infection in their CFS patient populations.

In this addenda, we further detail the multiple detection methods we used in orderto observe XMRV infection in our CFS cohort. Our results indicate that PCR from DNA of unstimulated peripheral blood mononuclear cells is the least sensitive method for detection of XMRV in subjects’ blood. We advocate the use of more than one type of assay in order todetermine the frequency of XMRV infection in patient cohorts in future studies of the relevance of XMRV to human disease.

Patient selection poses a challenge to any study of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In our October 2009 paper, samples bankedfrom 2006 to 2008 were selected for our study from severely disabled patients whofulfilled the 1994 CDC Fukuda Criteria for chronic fatigue syndrome1 as well asthe 2003 Canadian Consensus Criteria (CCC) for ME/CFS.

"Plenty of people are still dying of diseases which other people do not believe." (Dr. M.N.C. Dukes).CBT and GET for ME: "There is no nonsense so gross that society will not, at some time, make a doctrine of it and defend it with every weapon of communal stupidity."

Robertson Davies

THE NICEGUIDELINES BLOG VERSUS THE NICEGUIDELINES

These are NOT the NICEGuidelines. This is "The NICEGUIDELINES BLOG." What are the differences:

The NICE Guidelines are biased publications based on the GOBSART (Good Old Boys Sitting Around a Table) approach.

This Blog however is not only evidence based but also uses critical reading to judge papers and articles. I also use common sense and listen to others. And finally I read both psychiatric and medical evidence and opinions from around the world to come to a conclusion.

I’m not sponsored by anybody or paid by whatever company as seems to be the norm with many psycho people who publish the same article almost on a weekly base.

So if you value an opinion, formed as a result of participating in many ME activities, for example being bed bound for years, you have come to the right BLOG. All these activities have allowed me to form an opinion as a Doctor and as a Patient. And that is important as the voice of the latter is discarded by many including NICE.

If you don’t read this blog, you will miss out on “accredited” medical education. If you do read it, you may actually become a doctor who doesn’t stop thinking or forgets to ask critical questions. Many good things, including satisfied patients are at your command.

So, if you arrived here for the straightforward GOBSART approach, I will disappoint you. If you are interested in forming your own opinion about ME, and other interesting things, read on!

About Dr. Speedy.

I am a Family Physician or GP as it is called in Australia or the UK. I am also an ME patient unfortunately. Bedbound that is. So at the moment I’m in private practice so to speak. I’ve got only one patient, ME, or is it me?

I graduated as a doctor a long time ago, and I am the founder and editor of The NICEGUIDELINES BLOG, an internet based ME BLOG that is devoted to critical reading and cheering you or ME up.

I have the following conflict of interest: I would like to get better and see that the wasting of public money on CBT (talk therapy for a neurological disease, really helpful) and other silly therapies for ME stops, and will be used in better ways.

My goal has always been to help, and if possible, cure patients. With this disease you will soon find out that many psychiatrists and psychologists are only in it to make money and get their name in the spotlight. And what happens to and with the patients is irrelevant.

I stand to benefit both mentally, physically and also financially if this silliness would stop, and I would get my health back, and I can go back to work and have a normal life again. Please evaluate my postings with this in mind! And remember, there are also (lots of) psychiatrists and psychologists who haven’t switched their brain off.